News
Read the latest news, blogs and reports from the UK LLC and across the longitudinal population data community.
News
New infographics aim to raise public awareness of their legal rights relating to Longitudinal Population Study data use
UK LLC Communications Team
18th Nov 2024
UK LLC launches an infographic series to raise awareness among Longitudinal Population Study participants of some of the most important laws and legal principles involved in the use of their data for public good research.
The ‘Understanding Longitudinal Population Study Data and the Law’ resources were developed in partnership with the UK LLC Public Advisory Group and are published on the UK LLC website:
Through a funding call from the UK Health Data Research Alliance, launched by Health Data Research UK (HDR UK) and funded by the Medical Research Council (MRC) the infographics are designed to meet needs identified in the Alliance Transparency Standards, and have been created to improve transparency of health data access processes.
Sarah, one of UK LLC’s Public Advisory Group members says, “I enjoyed the challenge of working with the team on the Transparency Standards infographics. The topic and associated legislation on consent to the use of Longitudinal Population Study data initially seemed very complex and daunting. However, by working together and using our combined comments and insights I feel we contributed to the production of helpful infographics on this important topic.”
Andy Boyd, UK LLC Director says, “This award provided UK LLC with a great opportunity to raise awareness among the millions of people across the UK who volunteer to be part of a Longitudinal Population Study. People contributing their data for public good research are already well-informed by their study teams about how their data will be used, and who work hard to make sure there are “no surprises” about study data use. However, the law is very complex, so we developed these resources to provide a bridge between understanding the laws and legal principles to emphasising what these mean in practice for Longitudinal Population Study participants. We feel this is essential to helping maintain the social licence for using sensitive public data in research.”
Which laws are featured?
The infographic series outlines key messages about the laws and legal principles involved in Longitudinal Population Study data including UK Data Protection Laws, the Digital Economy Act (2017), the Common Law Duty of Confidentiality, the Control of Patient Information Regulations (2002)/Section 251 and a final infographic summarises the series.
Accessibility
The infographic series is also available in audio, British Sign Language and several non-English language translations – https://ukllc.ac.uk/lps-data-and-the-law
Free to download and share
The content is open and licensed under the Creative Commons Attribution–NonCommercial-ShareAlike 4.0 International License (CC BY-NC-SA 4.0)